Jump to content
ACN Latitudes Forums
  • Announcements

    • Administrator

      Forum Community Guidelines

      Forum Community Guidelines

      Our forums provide support for people dealing with neurological and related issues. Everyone joining this community should find it a safe haven where they are treated with respect, civility, and understanding.

      Your agreement as a user: You agree that you will not use this forum to post or send messages that are knowingly false, inaccurate, abusive, vulgar, obscene, profane, or sexually oriented. Text should not be defamatory, harsh, accusatory, intimidating, slanderous, an invasive of a person's privacy, or violate any law. Doing so may lead to you being banned (and your service provider may be informed). The IP address of all posts is recorded to aid in enforcing these conditions. You agree that the webmaster, administrator, and moderators of this forum have the right to remove, edit, move, or close any topic at any time should they see fit. You agree not to post any copyrighted material unless the copyright is owned by you or by this forum/website. Advertisements, solicitations for services or business, most research requests, as well as any type of research on the content of these forums by third-parties, are prohibited. Unauthorized use or reproduction of posts on these forums is not allowed. Any user who feels that a posted message is objectionable is encouraged to contact an administrator.

      Announcements, media requests, and research requests

      These need administrative approval. Please send to an administrator before posting.

      Inappropriate content

      Members are here for support and education. Check the list below for types of posts that are not allowed: Advertisements Flames or messages meant to intimidate, criticize, or harass others Threatening or obscene messages Messages discussing a private message (PM) from others Copyrighted materials that you do not own the rights to, except educational or research articles Messages containing or condoning illegal acts; also messages of suicidal intent Direct discussion of politics (please avoid) Specific or strong religious views Requests for donations for other organizations unless approved by administrator Solicitation of members for research, media projects or other projects, without prior administrative approval About links for other websites:

      You may have links in your profile as long as they do not violate our guidelines (above). Links within a post to online resources and articles are generally OK. Do not post links to other forum communities with the aim of soliciting other members to that community, thereby taking them away from this community.

      When a guideline is violated

      If you violate a guideline, you will be contacted by PM or email. We will try to resolve things amicably. We don’t like to ban members and rarely do, but this is an option.

      Updated March 19, 2010
    • Administrator

      Disclaimer and Privacy Policy

      Disclaimer

      The ACN Online Discussion Boards are intended to provide helpful information and allow sharing of ideas. Postings should not be considered as medical advice. All users should consult with their healthcare professional for questions or medical decisions.

      Users must accept full responsibility for using the information on this site and agree that ACN, Latitudes.org, advisory staff or others associated with the site are not responsible or liable for any claim, loss, or damage resulting from its use. Please remember that we do not actively monitor all posted messages and cannot be responsible for the content within. We can also not guarantee that access to the site will be error-free or virus-free.

      Reproducing any document in whole or in part is prohibited unless prior written consent is obtained. Web pages may be shared when passed on with the URL.

      Information posted on the Forum is done so voluntarily and will be accessible to the public. The material posted may be used by ACN (without the identity of the user) for publications or educational purposes. No compensation will be provided for the use of this material.

      Note: ACN is providing this service with the expectation that users will abide by the guidelines provided. We reserve the right to monitor postings and remove or refuse inappropriate and questionable material, as well as remove dated postings at our discretion, for any reason.

      Privacy Policy

      When you register with the Forum, you need only give your email address, which is available only to the Adminstrators and will not be shared on the Forum site or with others in any format. Forum users will see only the user name you choose to provide.

      Our web server collects and saves default information logged by World Wide Web server software. Our logs contain the date and time, originating IP address and domain name (the unique address assigned to your internet service provider's computer that connects to the internet), object requested, and completion status of the request. We use these logs to help improve our service by evaluating the "traffic" to our site in terms of number of unique visitors, level of demand, most popular page requests, and types of errors.

      You have the option of enabling to save your username and password data when you are accessing interactive parts of our websites, to allow your web browser to "remember" who you are and assist you by "logging on" without you having to type your username and password repeatedly. This is known as a cookie and it can be enabled or disabled in your control panel. Cookies are small files stored on your computer's hard drive that are used to track personal information.

      Except for authorized legal investigations, we will not share any information we receive with any outside parties.

      Updated March 19, 2010

msimon3

Members
  • Content count

    103
  • Joined

  • Last visited

  • Days Won

    4

Everything posted by msimon3

  1. If the antibiotic schedule is a treatment for Lyme Disease, then minocycline or doxycycline are effective at reducing bacteria counts however they also create a significant amount of round-body forms or "persisters". The medical community splits here with the IDSA camp saying these persisters are not a risk, and the ILADS camp saying these persisters are the cause of ongoing disease. You will need to make a decision and choose a side. If you think the persisters are a risk, ask your doctor about using a therapy that incorporates antibiotics known to eliminate round-body forms of borrelia, such as Flagyl. Here are some links that may be helpful: http://columbia-lyme.org/patients/ld_chronic.html https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4373819/
  2. I recently observed a similar reduction in tics when lying flat. It's very curious.
  3. Absolute Neutrophils low

    Low neutrophils is called neutropenia, and it may have several causes: https://en.wikipedia.org/wiki/Neutropenia For years we observed perpetually low neutrophils and high lymphocytes that coincided with clinical symptoms. Initially we suspected PANDAS but instead we found infection with Borrelia (Lyme disease) and Ehrlichia. After treatment, the clinical symptoms were greatly reduced and the neutrophils and lymphocytes returned to normal values. We used neutrophils and lymphocytes as one measure to determine the level of infection and efficacy of treatment.
  4. Skin Numbness

    Numbness is a symptom of Lyme that we experienced as well. We didn't noticed hot/cold however the skin has different sensory receptors for hot and cold than it does for touch and pressure. http://www.columbia-lyme.org/patients/ld_lyme_symptoms.html
  5. p66 (kDa) is inspecific to Borrelia, meaning it could be an antibody to other bacteria. Regarding why you would use Igenex for a Western Blot test, the short answer is that it will give better positive results that a CDC-based test that Labcorp or Quest offer. The Igenex test looks at two strains of Borrelia instead of one and it tests for more bands (segments of protein to which an antibody will 'stick') -- in particular bands 31 and 34 which are specific to Borrelia. The link above from ILADS is a good one. Here are some other helpful links: http://www.columbia-lyme.org/patients/ld_lab_test.html http://www.columbia-lyme.org/patients/controversies.html http://lymediseasechallenge.org/testing/ http://www.igenex.com/innovations3.pdf Keep in mind that a negative Lyme test (Elisa or WB) doesn't mean much. It means only that an antibody to a single protein on the Elisa was not found, or the right combination of antibodies were not found on the WB. A PCR (DNA) test is also very specific if positive, but also suffers from false negatives when no Borrelia is found in the sample even if Borrelia does reside in the body. The only reliable diagnosis of Lyme disease is a clinical diagnosis done by a competent and credible doctor.
  6. I am sorry to hear about your experience, and it must have been incredibly disappointing to be treated in that manner. Sadly, I count myself among many parents here who go through similar experiences as we try to locate a doctor who is credible, knowledgeable, and helpful. Once you find a good doctor, one who listens, things will get better. I have used sites like vitals.com and healthgrades.com to research doctor ratings. Those sites might be worth a look for leaving feedback about your experience. Regarding your daughter, have you considered seeing an immunologist or infectious disease specialist? It may be helpful to run some blood panels and look for signs of chronic infection. We did just that in the past, and we used those results as validation that an active chronic infection existed. Regarding the comments the doctor made about autism, he doesn't seem credible on the subject.
  7. I use this site often: http://www.ncbi.nlm.nih.gov/pubmed Some Lyme-related links I like: http://www.columbia-lyme.org/ http://www.ilads.org/lyme/about-lyme.php http://jemsekspecialty.com/lyme_detail/ A prudent course of action might be to record your health symptoms and pair a clinical assessment of those symptoms with any testing that might confirm a diagnosis or rule it out. For example, you cited OCD and rashes, but you also mentioned you are "tired out all the time" and have occasional loss of appetite. If you start with the basis that you are a health normal person, then any symptoms you have may be helpful in identifying a possible infection. Keep a journal of your health symptoms and note the frequency and severity of the symptoms. When you see a doctor, a doctor worthy of your cause will be interested in the journal. You could also seek some inexpensive blood analysis to look for any indication of disease or infection. In my case, a simple white blood cell test repeated over time suggested a systemic and chronic infection process. Pursuing a cure with or without health insurance is indeed possible, and you are already on the right path by recognizing your health symptoms and asking questions and looking for answers. Keep doing so until you are healthy. As others here will tell you, finding a cure can take a lot of time, money, and effort. Stay vigilant and good luck!
  8. You may want consider Lyme disease and possibly another tick-borne infectious disease like Ehrlichia or Bartonella. In some cases, Lyme disease produces a ring shaped rash called Erythema Migrans. Ehrlichia and Bartonella also can produce rashes in people however the appearance of these rashes will differ from Lyme disease. I mention these three diseases because they are common co-infections for a tick bite, and you cited your rashes appear different (rings then smaller with no shape). There is a lot of information about Lyme disease on this board for you to consider, including neurological symptoms of infection. A Lyme co-infection panel from Igenex labs is what I would pursue with your doctor, and it would show any antibodies your body is making to the three diseases I mentioned. If it was ringworm, the rash would likely become itchy and scaly, and spread until treated. A dermatologist can easily diagnose ringworm and can also perform a skin scrape to confirm.
  9. negative lyme and strep test

    Do you recall which bands were positive and which lab you used? If you were positive on Lyme, you might want to focus your efforts there. Here is a list of common coinfections: https://www.lymedisease.org/lyme-basics/co-infections/about-co-infections/ There are tests for these coinfections and some of these tests have specificity (false positive) or sensitivity (false negative) percentages that should be considered with any result. One line of testing that was very helpful for us was to run monthly red and white blood cell panels. We saw a trend in those test that indicated a sustained infection, and we eventually hit on a treatment that reduced the symptoms and also indicated resolution of infection on the white blood cell panel.
  10. Lyme disease can manifest in this way as well. It is called neuroborreliosis when Borrelia infects the nervous system, and tics can develop as a result. Some antibiotics have poor penetration into the central nervous system, so you may want to schedule another appointment with your doctor and get an antibiotic appropriate for a 4yo with good CNS penetration and good efficacy against Borrelia. This resource might be helpful: http://www.ilads.org/lyme/ILADS_Guidelines.pdf Modern research shows that Borrelia can be resistant to treatment, so extended antibiotic therapy may be necessary. If you doctor doesn't 'believe in chronic lyme disease' then you need to research this issue for yourself and perhaps find another doctor if necessary.
  11. No tics with fever

    We noticed the same thing. Tics would stop or decrease dramatically during onset of fever and illness.
  12. Lyme remains a clinical diagnosis because there is no test where you have both high sensitivity and high specificity when measuring the presence of Borrelia in the body. The commonly used tests ELISA and Western Blot measure antibodies to proteins and can suffer from false negatives due to either low amounts of antibodies or a narrow interpretation of what is considered an infection. Less common are PCR tests which measure the presence of Borrelia DNA directly and they can suffer from false negatives due to the lack of DNA captured in a sample. Antibiotics can be immunosuppressive, so if you intend to take the ELISA, EIA, ELFA, or Western Blot tests then you run the risk of false negatives due to low amounts of antibodies in the blood. If you intend to take the PCR test, you run the risk of a false negative due to lack of DNA captured in the sample ostensibly because you are killing the Borrelia with the antibiotics. In either case, perhaps schedule the tests out a week or two after the cessation of antibiotic therapy.
  13. PANS or TS? Please help

    The severe and rapid onset would make me think it was related to an infection. Have you had any general blood work done, like red and white blood cells? Are there any other symptoms that might indicate Lyme disease (e.g. known tick bite, lethargy, rash, joint pain) ?
  14. Steroids are immunosuppressive. Seeing a decrease in symptoms while on steroids, and then seeing an increase in symptoms off steroids may be an indication that the symptoms are caused somehow by an immune process and/or infection. Severe tiredness is one clinical sign of Lyme disease. Has your DD been tested?
  15. Our Lyme DS had high lymphocytes and low neutrophils for many years across several readings. At first doctors were somewhat dismissive about those results, but after a long span of time they stood as a metric to measure the success of the Lyme treatment. We stopped treatment protocol when tics subsided and then we measured WBCs again -- lymphocytes and neutrophils were both normal. For us, those WBCs were a good indicator of immune activity against the Lyme. If you feel the same, you may want to consider the efficacy of current treatment protocol. We modified ours over time when no changes were seen. While we tended to use protocols that used multiple antibiotics to hit the various forms of Borrelia, the last protocol we used employed Doxycycline + Flagyl which I feel was to most successful in killing the spirochete and cyst forms at one time.
  16. You are in the right place. You will find a wealth of information in this forum, and many people who are, or were, in the same situation as you. Lyme disease is a big deal. Borrelia are exceptionally good at evading our immune system and persisting through antibiotic treatments. How we perceive and treat Lyme disease is an even bigger deal. The medical community is split -- many doctors follow a 20 year old treatment protocol that many say is outdated and does not work while other doctors point to new research and treatment protocols that they say is more enlightened and appropriate. Watch "Under Our Skin" or read "Cure Unknown" for a primer on the split and controversy. Keep in mind that there is no single test that definitively says you have Lyme disease or not. The available tests have potential for false positive results and false negative results in some cases. Lyme disease remains a clinical diagnosis based on the assessment of a doctor. Therefore, finding a reputable and informed doctor is essential. If the tics are indeed caused by the infection, they may be a helpful gauge in monitoring the effectiveness of a treatment protocol. It is natural to be cautious about giving antibiotics -- most parents don't want to give their child medication without considering the consequences. Certain antibiotics have more potential for risks and side effects than others. However, the risks of not treating Lyme disease need to be considered. Lyme disease can be persistent, creating chronic suffering. It can also be pervasive, creating crippling effects on health. Many on this forum have had to make the same decision as you, and for that reason you will find a lot of empathy and support here. You will also find many who wish they would have discovered the cause of the disease sooner so they could treat it sooner and possibly avoid the complications of persistence. My advice is to start the treatment recommended by your doctor, hope for the best, and plan for the worst. Search this forum for LLMDs in Florida or create a topic with that subject and ask folks to private message you with names of doctors they recommend. You may need to pay out of pocket in some cases but it will be worth it to know that the doctor is free to pursue the right treatment without influence from health insurers. As aba mentioned, you may need to travel but it will be worth it to find the right doctor and not waste any time.
  17. PANS + Lyme + manganese?

    You may want to consider limiting your intake of manganese. New research suggests Borrelia use it to survive: http://www.whoi.edu/oceanus/feature/scientists-find-surprising-lyme-disease-bacteria-has-quirky-needs
  18. Help with Lyme treatment

    Lyme at any age can be a challenge, but at age 3 there is the additional challenge of choosing the right antibiotic for someone so young. Each antibiotic has a recommended age range for proper use, and there a fewer antibiotics available for a 3 year old than a teen or adult. Moreover, many doctors select antibiotics with a balance of safety, cost, and effectiveness, and then introduce new antibiotics if the prior antibiotic does not seem to work. Augmentin is a common antibiotic used for many infections, primarily because of its safety, cost, and effectiveness. I think it might be a stretch to claim that it is not a good Lyme drug in general but it may not be effective for everyone. Here is an interesting study showing the in vitro effectiveness of a set of commonly used antibiotics for Lyme disease treatment: http://www.dovepress.com/evaluation-of-in-vitro-antibiotic-susceptibility-of-different-morpholo-peer-reviewed-article-IDR Ultimately, your friend should see a good LLMD with pediatric experience. You could poll this forum for recommendations in a certain area (e.g. NY, CT). Dr. Jones in CT would not be too far from the doctors you mentioned, and he has a history of working with children and Lyme disease.
  19. Claritin for Lyme, anyone?

    Really interesting. Hopefully Claritin will be useful in curbing Borrelia. I wonder if the Borrelia will merely morph into cysts when denied Manganese: http://www.ncbi.nlm.nih.gov/pubmed/14961976
  20. Motor tics in a 10 year old boy

    You may want to consider seeing a doctor who will order a blood test to look at immunological activity, and will repeat that test over time to look for a pattern of chronic infection. For example, we found the level of neutrophils and lymphocytes to be abnormal over time, which helped confirm we were dealing with an infectious process rather than a neurochemical process. Also note when your son has any clinical symptoms, such as a low grade fever, joint pain, numbness, or anything out of the ordinary. Too often a doctor will focus only on data or symptoms that relate to their field of expertise and fail to seek a comprehensive assessment of health. Keeping a log of those symptoms will not only aid you and your doctor when looking at the clinical history.
  21. Great video, thank you so much for posting. I really liked Dr. Bransfield's presentation and I think that the neurological effects of Lyme are not well understood.
  22. steroid burst vs. steroid taper

    We tried both. The 5-day burst seemed inconclusive, so we then followed up with a taper. We saw symptoms go to nearly zero by the end of the taper, and then bounce back aggressively once the taper was over. That process was key in confirming the symptoms we saw were immune related.
  23. good news PANS /PANDAS LYME

    So happy for you! Thank you for sharing your update. It is great and inspirational to see a success story like this.
  24. Lyme labs. Help

    Agree with all of the above. Doxycycline or Minocycline may also be used for neurological Lyme at late stages of the disease since they are effective in crossing into the brain and nervous tissue. Both drugs are good at killing Borrelia but they also can trigger the bacteria to morph into cyst form. For this reason, Lyme doctors often prescribe a cyst busting antibiotic as well, something like Tindamax or Flagyl. Regarding congenital Lyme, the traditional viewpoint is that it cannot be transmitted from mother to fetus. This viewpoint is based on the fact that nobody has proved it to be transmitted from mother to fetus. However, Borrelia has been positively identified in stillborn fetuses and breastmilk by some researchers. These days the CDC agrees that it can "infect the placenta" but stops short of saying it could infect the fetus. There are many diseases that cross the placenta, including Syphilis which is caused by a spirochete bacteria similar to Borrelia. Regarding the problem with doctors and insurance, I think many here have struggled with this same problem. There is not agreement on Lyme disease in the medical community, and each of us as consumers needs to ask ourselves "is this doctor qualified to counsel me on this? why?" Many of us conveniently see local doctors who are covered by our health insurance, but to cure this disease you need to go to a good doctor, period. Location and insurance coverage are sometimes barriers to seeing a good doctors and getting good treatment. Many here have had to go to a good doctor who is not local, who doesn't take their insurance, and who prescribes drugs which are not covered by insurance, in order to get well.
×